Tag Archives: Down’s syndrome

Menna, mother of Cerys who was born with Down’s Syndrome, talks about the lack of support, emotional and financial from birth onwards.

I’m Menna, I am a single parent. When I found out I was pregnant, the relationship was over. I had no support and direct family support is minimal as my family live far away.

I didn’t know that Cerys was born with Down’s Syndrome until she was ten days old. The hospital just gave me a leaflet. No-one really discussed it with me. I was in a room by myself. The midwives were fine, but they didn’t know enough about Down’s Syndrome themselves to be able to discuss it with me. There was no one able to sit down with me.

We got referred to specialists to check her hearing and heart and everything else. I felt alone, there was nothing. I was just handed this baby and left alone. Obviously, being a new parent is scary in itself, without finding out that you have a disabled child. I was just left to get on with it.

The consultant we saw said that Cerys will possibly always have the mental age of 13. That was all she said really. There was no advice about her having Down’s Syndrome. There was nothing they could really tell me.

I couldn’t see a future for her

There is no disability in our family. I didn’t know anybody with a disability. I just remember thinking, I couldn’t see a future for her.

A young happy Cerys

They actually gave me a DVD to watch, which was no help whatsoever. It didn’t reassure me at all. In fact, it made me feel worse. The DVD was all about young children and toddlers, nothing about the future. I wanted to see older children and adults rather than babies. I had my baby and I wanted to know that the future was going to be okay. I needed a bit of reassurance really, which I didn’t get.

I just kept plodding on

There were no local support groups. I don’t drive. It made things hard. There are no support groups at all in my area.

I just kept plodding on. I did have a close friend who had a little boy, without a disability, who were quite close. Obviously, her experiences were different to mine.

You feel a bit vulnerable. Cerys was slower with everything. Things like eating solids, I couldn’t just give her solids because she would have choked. It was quite difficult. She was probably 18 months old before she started experimenting with food. I worked that out myself.

It’s been a case of trial and error. Obviously, I had friends who had children so I learnt from them, rather than specialist advice.

There is nothing when they are babies

When Cerys was a toddler, I started to have specialist support coming out to meet her for things like physiotherapy. Probably from about nine months old. In the early years, there is nobody.

Once you get the Disability Living Allowance [this is now Personal Independence Payment] you get other support like carer support. Financially there is nothing. If you have a disabled baby, there is nothing when they are babies.

Menna holding a new born Cerys

I applied for Disability Living Allowance for her when she was a baby but got refused. They said she was no different to any other baby. Although the hospital appointments begged to differ. There was no financial support until she was three.

I was advised not to go on the internet and not google because of the wrong advice I would be given. If I needed any advice, I would go through the Down’s Syndrome Association. If I had a specific problem, they were good.

Any support you can get, grab it

In the early years you should look for help if it’s out there. That’s what I lacked. Not getting the help and support from anybody. And if there are support groups, try them.

Any support you can get, grab it with both hands. I have noticed that as my daughter has gotten older, that the support has gotten better, but I still think that they do fail parents.

Cerys is beautiful inside and out

As a teenager, Cerys is no problem whatsoever. She has her moments, like any other teenager, but she is better than any other teenager.

She is amazing. She is funny. She is beautiful inside and out. She’s caring. She’s just the most beautiful teenager you could ever meet. You get the stroppy teenager, there is none of that. She is a lovely child. She always has been.

Cerys loves dancing. She loves posing. She had a couple of photoshoots. She is beautiful. I know you are biased as a parent, but so many people have said what a beautiful girl she is. She would love to go into something like that. I am looking into her going into modelling at the moment, but I don’t want to put her on the road to being rejected. Apart from that, she would love to be a model. She is amazing.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Donate today to help us provide vital services and support for families that need it most.

Oliver Hellowell is a young nature and wildlife photographer who happens to have Down’s syndrome. This Nature Photography Day, Oliver tells us what photography means to him.

I was about 10 years old when I first started taking pictures. I like wildlife, I like birds and I like the landscape and taking pictures of the trees. I like water and I like going for walks out into ‘the wild’ and the countryside.

We once had an exhibition and lots of people came to see my pictures. I gave a speech and we sold lots of pictures and with the money I bought a Chinese takeaway for us on the Sunday night when we finished, and bought a week in a holiday cottage in Wales in the middle of nowhere! I’m very proud when I have an exhibition.

My fans say ‘that’s amazing!’ about my pictures and write messages to me. I like it when we get more places to put on the map!

You should give photography a go. Just do it. Just go out there and do what you want!

As part of 30 Under 30, Oliver shares the top 10 photographs that he has taken.

Canada Geese Flying

This is my all-time favourite image. I have a canvas of it in my bedroom. This is my best one with the three Canada geese flying.

Clown fish in an anemone

I took this through the thick glass of an aquarium which is very difficult. I got the clown fish just right – it’s a really good picture.

Cormorant

I took this one and the cormorant was in the tree and looking out and I got it.

Grey Squirrel

I was on a day out with my friend Adrian and I got this picture of a squirrel. I got it straight on and he’s got his paws up eating and everything it’s brilliant.

Red Kite

I took this at the International Centre for Birds of Prey in Newent. I love the sharpness of this one and the brightness of the eye. It’s just very cool!

River Dart in Devon

This is a long shutter speed shot which I’m very pleased with. It takes a bit of effort and you have to keep the camera dead still or on a tripod. I love the colours in the water.

Single swan

I waited as all the swans bobbed their heads up and down in and out of the water to pick up the food which had just been given out and sunk to the bottom. I waited to catch a shot with just one head and beak showing.

Tulips

I said to my mum, “Mum you know those red flowers outside in the corner? Well, look! I really got them!”

From the ground

When I’d just taken this, I called my mum over to where I was standing, pointed to the ground and said, “see that bit of ground there? I’ve just got it just right! See the little green leaves and the light? I got that perfect!”

Watersmeet in Devon

I was very pleased with this long shutter-speed shot. I got it by standing my camera on a rock.

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Marcus Sikora, who is 25, has just published his first book for children: Black Day: The Monster Rock Band. We caught up with Marcus and his mother, Mardra who collaborated with him on the project, to find out more.

Brad is a paper boy who wants to be a rock star, so when he discovers the band Black Day playing in old Professor Hammer’s garage, he really wants to join. But the band’s monsters have a different idea and send him away, “No humans!” Brad sets out to change their minds…

That’s the story line behind Black Day, an illustrated children’s book brought to life by 25-year-old Marcus and his mother, Mardra, after Marcus started imagining himself as the lead singer of a monster band.

“It started with the band,” Marcus explains.

“Years ago Marcus had a band in mind for himself called Gold Day,” says Mardra. “When he started talking about a band of monsters, who all lived in a house together, I asked him – ‘What’s the name of that band?’ and he said, ‘Black Day.’ I thought that was a perfect name!

Marcus and Mardra have been writing together for some time, setting Sundays aside to come up with new ideas for stories. But there was something about Black Day that kept bringing them back to it. “I knew there were some really great gems in this idea,” Mardra explains. “And more kept showing up as it developed.”

Working closely with the book’s illustrator, Noah Witchell, Marcus and Mardra spent over a year developing Black Day. “Me and Mardra wrote the story,” says Marcus. “We all worked together. Noah and my drawings, then he animated himself.”

Mardra points out that everyone involved in the project followed Marcus’ lead. “It started with his great imaginative story, and Noah made sure to keep Marcus’ vision of the story and characters as a top priority,” she says.

Many of the characters in Black Day are based on people in Marcus’ own life. “I got Frankenstein based on Quinn (my dad), the drummer,” he says. “Brad also, Quinn’s best friend. And I’m the singer.

“Skeleton Pumpkin Head is my favourite. And my favorite part is, ‘This kid has a one track mind’.”

Skeleton Pumpkin Head is Marcus’ alter-ego, Mardra explains. “As with any story-teller, I can see Marcus in every character, but Skeleton Pumpkin Head is the one he identifies with the most.

Asked how he found the writing process, Marcus says, “Fast. Not hard.” Publishing is not for the faint of heart, but Marcus says it was worth all the hard work. “I love it when the people love the book so much. A lot!” he exclaims. He already has plans for a sequal. “Black Day Two through Five,” he says.

To celebrate Down’s Syndrome Awareness Week (20-26 March) we will be giving away a free copy of Black Day: The Monster Rock Band on our Twitter and Facebook. To enter, simply look out for the post and comment!

(The prize draw closes on 26 March at 10am. The winners will be chosen at random after this date and notified via social media. Books can only be posted to addresses in the UK and no cash equivalent or alternative prizes will be offered. This prize draw is not associated with Facebook or Twitter).

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Oliver is a young nature photographer who happens to have Down’s syndrome. Here, Oliver and his mum tell us what photography means to him.

Q&A with Oliver

Scope: When did you first start taking photos?

Oliver: I was little – I was about 10 years old.

Scope: What is it about nature that you find so interesting?

Oliver: I like wildlife, I like birds and I like the landscape and taking pictures of the trees. I like water and I like going for walks out into ‘the wild’ and the countryside.

Scope: Do you have a favourite animal?

Oliver: I like birds of prey and I really like long tailed tits.

Scope: How did you feel when you sold your first photograph?

Oliver: We had an exhibition and lots of people came to see my pictures. I gave a speech and we sold lots of pictures and with the money I bought a Chinese takeaway for us on the Sunday night when we finished, and bought a holiday in a cottage in Wales in the middle of nowhere! I’m very proud when I have an exhibition.

Scope: If you weren’t taking photos in your spare time, what do you think you’d be doing?

Oliver: I play football and snooker, and I don’t do so much skateboarding so much anymore. I read my books and my magazines and I like to watch TV. I still do bird-watching and walking in the countryside even if I don’t take pictures with my camera.

Scope: What would you say to other young disabled people who don’t have much confidence?

Oliver: Just do it. Just go out there and do what you want!

Scope: How have your followers on Facebook and the publicity around your photos made you feel?

Oliver: It’s good. I like it. My fans say ‘that’s amazing!’ about my pictures and write messages to me. Yeah it’s good. I like it when we get more places to put on the map!

Wendy, Oliver’s mum

Oliver was born with Down’s syndrome, and severe cardiac issues requiring open heart surgery at three months old. During his early years he was also diagnosed with severe hypotonia (poor muscle tone) and verbal dyspraxia. I was told he wouldn’t be able to take part in sporting activities, and that his speech would probably never reach a point where he could be understood by an unfamiliar listener. However with belief, determination and input from myself and Oliver’s big sister Anna (who was eight when he was born) by the time he was eight years old he was skateboarding as well as playing football, basketball and snooker, and at 10 years old was asking perfectly clearly for a Subaru Imprezza with a spoiler on the back and a Bugatti Veyron for his birthday!

Oliver is testament to the fact that anyone can achieve and prove negative predictions to be wrong, when they are surrounded by optimism, belief, determination and encouragement. My partner Mike has been best mate and stepfather all rolled into one for Oliver – they both love wildlife, the countryside, and bird-watching. Mike came into Oliver’s life when Oliver was nine. When Oliver was about 10 or 11 he started to want to take photos “like Mike”.

Mike’s targeted tuition and guidance has helped Oliver to use the world of photography as both a tool for him to record what he sees in the way he sees it, and as something which brings Oliver a great sense of pride and self-esteem. He takes pictures of everything and anything which ‘catches’ his eye and will spend as much time and effort on a torn and ragged leaf or some broken sticks as he will on a beautiful bloom. He loves the light catching anything and particularly water. He will spend ages capturing splashes at the bottom of a waterfall or in a rocky river. Birds are probably his greatest love and his knowledge and ability to identify any bird at a glance and even from a distance is astounding. Oliver takes pictures of things other people walk past because he notices the detail the rest of us miss. He sees beauty where we do not, and to a certain extent his having Down’s syndrome ‘releases’ him from the ‘rules’ and expectations of what is perceived to be worthy of a picture, which the rest of us adhere to without even realising. Oliver makes weeds look brilliant!

He is a truly inspirational young man who loves life and loves what he does, and seeks to be a ‘professional’ earning a proper income from his talent. His achievements are changing and improving the expectations of others, championing disability, and helping to banish outdated and negative stereotypes associated with Down’s syndrome. We receive so many heart-warming messages from parents of disabled children explaining the huge difference Oliver has made to their lives by restoring hopes, dreams and aspirations for their children. He illustrates just how important it is that we value and enjoy diversity in society, and spreads the news that ‘difference’ can be something to be truly celebrated.

Guest post from Caroline White, a writer and speaker. Caroline’s son Seb made headlines when he became the first model with Down’s syndrome to star in a major UK TV ad. For National Sibling Day she’s written for us about Seb’s relationship with his brother Dominic.

The week that Seb was born is a bit of a blur to me. I can remember snippets but it was so fraught with emotions that it is hard to recall it with much clarity.

One thing I do remember very clearly is saying to Simon, my husband, how I wanted us to have more children. One of the reasons, I am ashamed to admit, was because I was feeling sad about Seb’s diagnosis of Down’s syndrome and the thought of going on to have a “normal” experience helped soften the blow. I also felt that having more children around would benefit Seb and I had visions of a busy bustling house. It helped me see the future a little brighter.

Falling more and more in love with Seb

I went on to fall pregnant fairly quickly. It was for all the wrong reasons and I look back and feel so sad that I was so desperate to have another baby instead of enjoying the precious one I already had.

I lost the baby at 11 weeks. I am not negating how tough it is for the many women who miscarry their pregnancies, and at the time I was devastated, but it turned out to be a positive thing. My body was emotionally and physically wrecked, not only from becoming a new mother, but also from the emotional turmoil and shock that came with the diagnosis. A few months later I lost another at about the same number of weeks.

Over time, Seb’s diagnosis became a much smaller part of him and I became less fixated about having another baby. I began to realise that I would be every bit fulfilled and enriched as a mother if Seb was the only child I ever had, although I did still like the idea of Seb having siblings around him. And that’s when I fell pregnant with his baby brother.

Along came Dominic

The day we brought Dominic home from hospital I remember thinking how enormous Seb had suddenly become. Two and a half years older, Seb’s little face looked so vulnerable and confused. I also carried with me guilt that I had felt so euphoric at Dominic’s birth, something that was missing with Seb.

I had the usual maternal worries – would they get on? Would Seb be jealous? The worries were magnified too. Would Dominic grow up to resent Seb? Would he be embarrassed of him? Would Dominic be bullied? I worried about the “burden” of Seb on Dominic’s little shoulders. I would never want Dominic to feel his wings were clipped or that he was responsible for Seb but at the same time I hoped he would feel a certain amount of responsibility and care about what he is up to. I worried (and still do) about when Simon and I are no longer here and Dominic would have no immediate family to talk things through or make joint decisions with.

And so, it seemed, overnight…..along came Polly. Seb’s little sister.
And from the minute he set eyes on her, he was besotted. I will never forget the first night she had with us at home, he crept out of bed in his pyjamas and I found him sitting next to her bouncy chair, tenderly reading a Peppa Pig book to her (whilst she was asleep).

Becoming great friends

All three children are very close, particularly Seb and Dom. Just the other day someone said to me “they’re such great friends aren’t they?” and yes, they really are.

Far from resenting Seb, Dominic has the utmost respect for him. He looks up to him, he sees him as his big brother. He wants to include him in everything he does and misses him when he is not with him. If he makes anything at pre-school his first thought is how he wants to share it with Seb. Often he will say he can’t wait to tell Seb something about his day and when Seb has been told off he will sneak off to keep him company – even if the telling off is because he has been mean to Dominic. On a recent shopping trip, Seb was refusing to come with us and we pretended to go off without him – Dominic shrieked and refused to move too. He was visibly upset and stayed put with Seb.

There have been so many occasions too when Dominic has had to be very mature for his age. Seb has a tendency to run or scoot off – he seems to live in the here and now with no thought of consequence. It happened several times when Polly was a newborn baby. Post c-section, I was faced with asking a 2 year old Dominic to stand in charge of his little baby sister whilst I raced after Seb. He has never complained about it and just got on with it. There was also a trip to Longleat when Seb vanished. It is a long story, but 45 minutes of hysterical mother, like a scene from Eastenders, all witnessed by Dom – thankfully with a happy ending. It is something Dominic remembers today and, as a result, he always has his eyes fixed on Seb and will tell me as soon as it looks like he might be wandering off.

The “biggest heart”

A few months ago it was Dominic’s pre-school parents evening. I was exhausted and almost didn’t go. It is not easy to park, it was dark and cold, I didn’t think they would tell me anything groundbreaking and I had a million reasons why I couldn’t face it. I made the effort to go though, because Dominic IS always overlooked. What the teachers told me completely took me aback.

They told me that his empathy levels are incredibly mature for a four-year-old. They said he will always stop and help anyone who needs it, that he cares about his peers and that he has the “biggest heart” in a four-year-old that they have ever seen. He always thinks of others and wants to share his experiences and belongings with everyone. The feedback reduced me to tears.

Dominic has seen me care for Seb and as a result he now looks out and cares for others too. I have unintentionally set a good example and I couldn’t be more proud.

Will Seb’s siblings grow to resent the extra attention that Seb naturally commands?

We have never told Dominic that Seb has Down’s syndrome. Unless he asks me, I don’t see we have any reason to tell him. Down’s syndrome is a medical diagnosis and, whilst it is useful in preparing health care and educational plans, I want Seb’s siblings to just see him as Seb. No pre-conceived ideas or assumptions. Just Seb.

I am not naïve enough to think that the “differences” between them won’t always go unnoticed and Dominic did take me aback a few months ago in the kitchen when he said “Seb talks funny, doesn’t he?”. Stumped for a response, I said “well, we are all different aren’t we? Some of us are good at running, like Seb, and some of us are good at talking, like you” and he turned to me and said “Maybe he was talking in Spanish, he’s good at Spanish”.

I think it all boils down to inclusion AGAIN.

By being included in our typical family unit, Dominic gets to see that Seb is a person, not a condition. He sees the bright, witty, bundle of energy that Seb is. A hard working, older brother with a fantastic sense of humour and an obsession with football. A person of equal value, that brings as much to our family as any of us. An important and key component in all our lives, that is human and real and not a paragraph in a text book or a group of outdated stereotypes.

And so it seems, yet again, my unnecessary fears about the future that stemmed from a diagnosis of Down’s syndrome have not become a reality. Seb continues to teach us all about life and equality, humanity and priorities, and see the whole world differently. Not one of us in this family, least of all his siblings, would swap a single thing about him.

Austin quit his job to become a full time dad to his son Christian, who has Down’s syndrome. Here he talks about the training he received from Scope’s befriending service and how it helps him support other parents.

“I left my job at a solicitor’s firm to become a full-time carer when my son Christian was diagnosed with Down’s syndrome. Three years on, I volunteer for Scope’s befriending service, giving emotional support to other parents of disabled children.”

“My partner Victoria and I found out Christian had Down’s syndrome just five days after he was born prematurely.”

“I was at home waiting to pick my other son Lawrence up from school and I got a phone call from Victoria,” Austin says. “I knew immediately that Christian’s blood tests for Down’s were positive because all I could hear on the phone was crying. Victoria was inconsolable.”

Craving emotional support.

“There was no follow-up and no support,” says Austin. “I’m pretty sure most of the leaflets ended up in the bin. We were in no fit state to take in a load of information.

“The one thing that did make a difference was that one of the nurses had a daughter with Down’s. She was wonderful, absolutely superb. She came in and sat down with Victoria, put her arm around her, and spoke about her own daughter. She made such a difference it was untrue.”

“Training for Scope’s befriending service made me realise I’m not alone.”

A few months later, Austin realised he couldn’t combine his demanding job with giving Christian the care he needed, so he decided to become a full-time dad.

In the first 18 months of Christian’s life, he was admitted to hospital nine times with chest and bone infections. On one of those hospital visits, Austin spotted a poster for Scope’s befriending service. Knowing the difference the nurse had made for him and Victoria at the hospital, Austin decided to train as a befriender.

“The training was first-class. I loved it because it made me realise I wasn’t alone. There are days when you don’t want to get out of your pyjamas and leave the house. Doing the Scope training made me realise that most other parents have those days.”

“There are no other male befrienders in my area, but you can bet there are plenty of dads who need someone to talk to.”

Nearly a year after he did the training, Austin remains the only male befriender in Liverpool.

Christian is now three, and recently started nursery. “Christian is a bundle of fun and a bundle of love”, says Austin. “He’s a joy to be with.”

One morning a week Austin volunteers at the Alder Hey children’s hospital, giving support to parents whose children have just been diagnosed, or are recovering from major surgery which has left them disabled.

“One man I supported has a baby daughter with Down’s. On the first day we met, I said to him: ‘the one thing about children with Down’s syndrome is that they radiate love. You’re never ever going to get love like that from any other human being in your life. It’s such a wonderful thing but you can’t see it at the moment because she’s only a baby.’”

“Scope offers an amazing service. It can really hold families together at a time of absolute crisis.”

Austin remembers how hard it was dealing with the emotional anxiety of finding out about Christian’s condition. “If we’d had some human touch at that early stage, it would have made all the difference. We needed to speak to someone who had been there and who understood. You cannot underestimate how valuable Scope’s befriending service is.”

He also hopes more dads will become Scope befrienders: “Men bottle things up and don’t talk about their emotions as much as women.

“It’s only when they’re put in a room with someone who’s been through the same things as them that they will open up – that’s why befriending is so important”.

In January Sport England launched the This Girl Can campaign to celebrate active women everywhere. The campaign immediately became a sensation with the video being shared widely. One of the stars of This Girl Can, Ruby, has Down’s syndrome. Ruby and her Mum Elaine talk about her involvement with the campaign.

Elaine

I call Ruby my water baby as she’s such a keen swimmer. However, there’s one thing that makes her different to other girls of her age, which is that she has Down’s syndrome and was born with a hole in her heart. But she doesn’t let that stop her – Ruby has a real talent and passion for swimming and trains two to three times a week and also does synchronised swimming.

Like Ruby I also began swimming when I was younger, but I didn’t have parents who encouraged me to exercise when growing up. I started going to a swimming pool near Holloway Road in London, where the lifeguards would give me tips on how to improve my strokes. I quickly fell in love with swimming and used to go five to six times a week.

I could tell Ruby had a natural ability from the beginning and she started having lessons from the age of 6 months old. Knowing how important exercise is for health and well being, I’ve invested a great deal of time teaching Ruby everything I know and seeing the joy she gets from it puts a huge smile on my face. Even though she trains just as much as the other girls, people are always surprised at how good she is – I taught her how to swim and do water aerobics and she is now better than me!

Ruby says swimming gives her a real sense of freedom, supported by the water she is really flexible and can do much more with her body, we still swim and do water aerobics together, having handstands and forward roll competitions – it’s a big part of our lives and a great activity for a mother and daughter to share.

Ruby

I have to thank my mum for getting me into swimming, she taught me when I was just a few months old and since then I’ve gone from strength to strength – I’m now a member of the Hoddeson Swimming Club in Hertfordshire and compete in the junior Special Olympics and I’m also a member of Aqualinia Synchronised swimming club in Stevenage. Training with children of all abilities really helped build my confidence and I’m really proud of what I’ve achieved. I’ve won a few silver medals and one gold and would say to any girl who wants to swim, just dive in!

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Agi Kolaczynska (11) has been making films about her little sister, who has Down’s syndrome, since she was eight. Here she talks about film-making, changing attitudes about Down’s syndrome and what sparked off her ‘My Little Sister’ project.

I have been an enthusiastic filmmaker since I got my first camera on my sixth birthday, and have taken it everywhere with me ever since, filming and taking photographs of everything – and I mean everything.

When I was eight, my mum found a great new website called Netbuddy (which is now part of Scope) who were running a short film competition. She suggested I make a film about what it’s like being Magdalena’s sister. The deadline was that night, so I engrossed myself in editing a year’s-worth of footage I’d taken of me and Magdalena. I called it My Little Sister (who happens to have Down’s syndrome) and uploaded it to Netbuddy.

My film won the competition, and I started getting lovely messages and feedback from all over the world. People were asking me “when is the next one coming out?” and I thought wouldn’t it be be fun to make this into a lifelong project. So, I made a website and started blogging about our lives together. The film – which now has 23K views on YouTube – became the first episode of “My Little Sister (who happens to have Down’s syndrome)”. It now has ten episodes in total, with more to come.

Changing perceptions of Down’s syndrome

From the feedback I was getting, I could see my films were changing what people thought about Down’s syndrome. They were encouraging other families to feel good about the future. As I got older I experienced some of the stereotyped ideas people have about Down’s syndrome, and how hurtful these could be to Magdalena and the people who loved her. This made me want to make more films to show the world all the magical moments we shared, and the parts of Magdalena’s character they would see if they looked beyond the Down’s syndrome.

As I heard other people’s stories and experiences of how hard it had been for people with Down’s syndrome in the past, I felt even more strongly about the need to stand up for my sister and other people with Down’s syndrome. I started getting messages from people who knew nothing about Down’s syndrome or had had a completely different view before they had watched my films. Others started asking questions about Down’s syndrome. People were writing to me from all around the world and featuring my films on their blogs in Spain, America, Morocco and loads of other places.

The National Youth Film Festival Awards

Last Autumn I submitted my films to the National Youth Film Festival Awards and was amazed when, a few weeks later, I received a phone call saying I’d been shortlisted for the ‘Ones To Watch award.’ This award was to honour young people with “exceptional talent and ambition in film.” It felt amazing to be recognised for doing something I loved.

An invitation followed to attend the Gala Award Ceremony at the Vue Cinema in Leicester Square. So we trooped down to London, not really knowing what to expect. It was very glitzy, like the Oscars, with actors and producers and golden envelopes with the winners names in. As the winners walked on stage to be presented with their award, their images were blown up huge on the cinema screen.

To be honest, I felt overwhelmed as I had never experienced anything like it before. I didn’t expect to be called on stage, as I didn’t expect to win, but suddenly I heard my name called up, and I had won! Jim Carter from Downton Abbey presented me with my award and I really enjoyed meeting the other young filmmakers, hearing about their projects and asking people what films they liked watching.

Winning the award has made me determined to learn more, and this year I am going to think about how to get access to better equipment, training and a better website. Most of all, I will carry on enjoying spending time with my sister and making movies.

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To mark Down’s syndrome awareness week, we’re publishing this story by Emma Sterland, who works on Scope’s online community. It was first published in the Guardian, and we’re sharing it here as part of our 100 Days, 100 Stories campaign.

You knew something wasn’t right before anyone else did.

You kept calling the nurses over, but he was always asleep when they came. You wanted them to see his eyes, but he always had them closed. They smiled and put it down to new-mum nerves, but you knew.

“Your son is a congenital idiot,” were the doctor’s carefully chosen words. They are as sharply etched now as they were 54 years ago. “Best to wipe the slate clean and start again.” You were young and newly married. This was 1956 and mental institutions were still the norm. No one expected you to take him home. But you did.

You had to feed him round the clock, he was so slow to eat. It took him a long time to reach the milestones other parents took for granted – rolling over, sitting, holding a spoon – but you knew he’d get there. And you delighted in his achievements, no matter how small they might have seemed to others.

He was “ineducable” but you taught him to read and write. You showed him how to keep a diary and encouraged him to write thank-you letters. He was a little clumsy, but he loved to help. You’d give him a big bowl of peas to shell or have him rolling socks into pairs.

Having a child with Down’s syndrome was nothing to be proud of then. But he was your firstborn and you were proud of him. When a friend asked him to be the page boy at her wedding, you wrote an article in this newspaper about it.

He was seven when I was born. By then, you’d learned to ignore unkind remarks, so when a neighbour peered into my pram and said, “See you’ve got it out of your system then,” you just smiled.

You say he adored his baby sister and was always eager to hold me. He was the perfect play companion – patiently returning toys I’d chuck out of my cot. I have happy memories of camps he and I built together under the dining room table.

When my younger brother was born, your family was complete. You had three of us to look after, each with our own separate needs. You made it look effortless, but I realise, now, how much work you put in.

I didn’t really mind people being curious about my brother. I never felt ashamed of him. Even as a sensitive teenager, I wouldn’t flinch when he wore his Batman costume to the beach or stood up in the cinema to wave at his favourite characters. I took my cue from you. It made him happy – where was the harm?

But sometimes I just wanted to be like everyone else. You gave me the space to do that. Somehow you made us all feel special and important. I know, from hearing other people’s experiences, how hard that can be in families with disabled children.

You taught me some of the most valuable lessons I’ll ever learn. You showed me that everyone has their own contribution to make, whatever their ability. You taught me about tolerance and compassion. And, above all, you showed me how to get on with life, even when it throws you the unexpected.

At 78, you’re still caring for my brother. You take him to his clubs and his horse-riding, and you massage his arthritic feet. You’re still proud of him after all these years. You show me things he’s made at his day centre and tell me funny things he’s said. You should be taking it easy now, but you’re still a full-time mum.

I know there are many others like you, who’ve had a lifetime of looking after their sons and daughters – a lifetime of putting someone else’s needs before their own. I salute you all.

The episode features my character Jacob, who lives in an institution for disabled people. We learn about his relationship with another resident, Sally Harper, who has Down’s Syndrome. The story follows their struggle to be together as everyone around them rejects their right to be in love.

The media has described the episode as the most controversial story line yet. For me it’s highlighted an aspect of our social history that has not had the recognition it deserves: disabled people in love.

Meet Jacob

My character Jacob first appeared in series two of Call The Midwife. Living in St Gideon’s institution, he symbolised the segregation of disabled people in post-war Britain.

In the episode a couple need to decide if their child with spina-bifida should be put into St Gideon’s. Jacob steers them towards bringing their child up in the community with the line: “there’s a biscuit factory next door… we get the broken ones”.

Viewed by over 10 million people, people praised the show for using a disabled actor.

When we meet Jacob again in today’s episode he’s a responsible young man, contributing to the running of St Gideon’s.

How things have changed

Colin and Sarah on This Morning

Lots of the media attention has been on my own love life. I’ve always tried to be as independent as possible, with support to enable me to achieve this. I believe that dating should be an ordinary part of my independence.

People aren’t as shocked at this as they were back in the 1950s. To see disabled people in a relationship isn’t the taboo it used to be. But it’s still difficult for disabled people to date.

Inaccessible venues, pressures to conform to stereotypes, and people’s attitudes all make dating challenging.

Changing attitudes towards disabled actors

I believe the courage shown by Call The Midwife will encourage writers and agents to include disabled people in their programmes. I hope we will see more disabled people in ordinary roles, where the focus is on their inclusion as equal members of the cast.

It was incredible to get my first professional acting role on such a popular drama. Playing the role of Jacob has been an amazing honour, but the best part has been the acceptance as an actor by the cast and crew. During the filming I felt like one of the family – chatting with Miranda in make-up, Helen and Bryony between scenes, and sharing banter with the sound crew. It gave me the sense of being an actor in my own right.